People dream about packing up their family and adventuring around the country – but if your kid has high medical needs, it can feel impossible. Chloe Turner challenges that feeling. And is currently living with her family in a caravan, travelling around Australia with her tube-feeding son in tow.

So many people questioned us about uprooting our family. Paediatricians gave my son Lincoln the all-clear, medically speaking, while warning us that he wouldn’t have opportunities to socialise. But he’s gone from being a shy little toddler who would hide behind my legs to a kid that says, “Mum, there’s a new friend!” He’ll suss out other caravans and say, “Mum, bikes! Mum, friends!”

Before we hit the road, my husband, Shaun, and I weren’t in a good place. We’d been through a lot with Lincoln who has several medical issues but, as yet, no diagnosis. We were also in a load of debt from his medical bills and, with life constantly being disrupted, we were struggling to hold down jobs.

It got to the point where Shaun and I just looked at each other and said, “what are we doing?”. We felt like we were just trying to survive. We weren’t getting anywhere. We weren’t achieving anything. What we really – and always had – wanted to do, was travel.

Then I went away with the kids for a week while Shaun worked. I just needed to get out of the house – it was raining, it was winter, it was awful. So we went away and something incredible happened. Lincoln slept. This is a kid who we usually have to medicate to sleep, but he went to sleep with the sun and woke up with the sun. He let me get him dressed, he let me change his nappy and he was happy. He was a different kid. And I thought, we just need to do this.

Lincoln was well at the time – he’d weaned off his nasogastric (NG) tube. But the real clincher was when Shaun walked in our front door one day and said, “the carport is bloody flooded again, let’s do it”.

So we started telling people. We told my parents over drinks at our local pub and Mum said, “gosh, I have a friend who did that. I haven’t seen her in a couple of years but I’ll shoot her a message”. I kid you not, that woman walked in the pub door five minutes later. We spent the next hour quizzing her about how she did it with young kids. Hearing how much her children thrived while travelling, we knew we had to do it.

Meanwhile, our good friend’s brother heard we wanted to sell our house. He did a walkthrough of our place and, two weeks later, it was sold. We got rid of all of our stuff, paid off our debts and bought a caravan. We were homeless, but happy. Once we set off – westward from Adelaide – our stress disappeared.

Our caravan is on the luxury end as we wanted to be comfortable. You can’t be in the middle of nowhere without a toilet, especially with kids toilet training! Having our own bathroom means we can go off-grid, as we do often.

A recent highlight was spending a week in Western Australia’s Karijini National Park. The park is about three-and-a-half hours from Port Hedland and it’s full of gorges that have been carved out of the land by spring-fed water. There are waterfalls and swimming holes filled with fish. Both kids faced their fears of tiny fish nibbling at their feet and went swimming. There are dingoes around, too. I saw my first wild dingo, which was on my bucket list. Next to tick off is swimming with crocs in Lake Argyle.

We took the child-hiking carrier to Karijini because Lincoln doesn’t have a great amount of stamina, but he’s a natural climber. We were doing class-five hikes – which is the highest level you can do without a guide – and Lincoln was scrambling down gorges like they were ladders.

When we came back to Port Hedland, one of our caravan park neighbours told me, ‘you’re glowing’. I felt so replenished. We’re now settled for four weeks of fishing, swimming every day and working before heading off again for three months to Darwin.

I help Lincoln’s sister, Grace, with her distance education during the day so I’m working night-fill at Woolworths. They’re happy to have me for whatever hours I want to work and it’s not an issue if I need to duck off midway through a shift when Lincoln is sick. Now that I’m on their payroll, I can walk into any Woolies around the country and start work within a week.

I’ve also got my online tube-feeding accessories store, The Travelling Tubie Project, ticking away thanks to a fellow medical mum I hired to take care of the operations back home in Adelaide. We recently had a three-hour Zoom meeting about our new pump hangers which I’m so excited for. It’s a great partnership and she does an incredible job.

Being on the road has allowed me to get creative and build out a new arm of the business. I’d always wanted to do photography and one night before we set off it hit me – I could meet and photograph tubie families as we travel around.

With no diagnosis, I’ve always felt that Lincoln – and our family – doesn’t have a space to belong. Well, why can’t we just make that space? If you’ve got or have had a tube, it doesn’t matter why you’ve got it, you can be a part of this. That was the plan behind my project and it’s led me to so many lovely families.

Our travels have had to be slow. We were supposed to have lapped the whole country by now but we’ve only done Western Australia. That’s actually been a blessing because we’ve been able to dive deeper into communities and get to know people better.

Lincoln has had some health troubles so his NG has made a return. Had this happened at home, I would’ve sunk back into a bad place. On the road, it just felt like a speed bump. Thankfully I met some mums in Perth who sorted us out, because we didn’t have any tube-feeding supplies.

I jumped on the Mighty Mums’ Perth Facebook group and said: “Can anyone help me? I can return the favour by taking photos of your family for free!” The families I photographed in Perth all have vastly different stories. The first family I met with belonged to Amiyah, a terminally ill child. This family was so welcoming and so loving towards their daughter. I’d walked in so nervous – and left with my heart full.

Another family booked a studio for our shoot – which was a first for me – and we managed to tear the backdrop. We got some great captures regardless and I ushered the family outside for some golden-hour shots. That’s really become my thing. A lot of my photos have a sun flare or a little rainbow in them. I feel like that says, here’s your little bit of hope, you’ve made it through this.

The family that booked the studio has a little girl on total parenteral nutrition (TPN) and she’s got a G-tube as well. She was lots of fun – so giggly and funny. I got some beautiful photos of her holding her pump pole and the sun was just peeking through from behind her head.

There was another little girl in a wheelchair and she was a bit trickier to photograph. But once Mum got her giggling and moving around, her face just lit up. Everyone I’ve met has been so happy, so joyful.

A few families have told me they’ve tried to work with other photographers – ones who don’t have any knowledge of tube-feeding or disabilities – and it’s been awful, uncomfortable and at times even unsafe. That’s really spurred me on to keep doing this.

We’ve been on the road a year now and will keep travelling – on to Broome, Kununurra and Darwin next – as long as Lincoln’s health lets us. We’re having so much fun and even when things have gotten hairy, we’ve managed. Most of the time, the curve-balls have given us great stories to tell.

While we were snorkelling in Exmouth, Lincoln got an ear infection, so we got him on antibiotics. Once he seemed better, we felt reassured enough to head to our next destination, Giralia Station, an outback setting along the Coral Coast that, as we would discover, is only accessible via almost 30km of corrugated road.

It was beautiful there – riddled with turtles – but by our second night, Lincoln wasn’t looking great. His temperature started to spike at 40C and we couldn’t get it down with Panadol and Nurofen. So we woke early one morning, packed everything up, drove the bloody 30 corrugated kilometres at 10km/h to get out and continued for seven hours straight to the hospital in Karratha. The last two hours were the toughest, by far.

Once admitted we found out he had two antibiotic-resistant viruses, so I’m glad we made that choice. There have been a few times we’ve had to pack up and hightail it to a hospital because Lincoln has needed something. We’ve got vital signs monitors in the caravan, so we can monitor him, but there are times when our guts tell us we’ve gotta get going.

Lincoln’s tube has been in and out. It’s in again now and when I got back to the caravan after Lincoln had it re-inserted, I was pretty devastated. I said to Shaun, “I feel like I have to torture our child to make him feel better”.

But then I heard Shaun speaking to our neighbours about Lincoln’s tube. “He’s had it before,” Shaun said. “He knows what to do.” The neighbours asked, “can he still play?” and Shaun said, “can he ever”. This kid hangs from trees a lot of the time, so we just have to make sure he tucks it in so he doesn’t pull it out – which he’s done before! He can still go swimming. He can still do everything. If anything, the tube makes this possible.

Listening to Shaun gave me the pep talk I needed. I’d only just gotten used to people not staring again and I thought Lincoln’s friends were going to freak out. But they just said ‘oh cool’ and kept playing.

We’ve learnt a lot on this trip and it’s reconnected us as a family. We’ve grown closer and have started to heal from the trauma we went through with Lincoln. I hope we can inspire other families raising kids with medical needs to travel and do things that they might think are impossible.

For those who want to travel, I’d advise planning ahead, knowing which hospitals have 24-hour emergency departments along the way and having spare gear and meds on board just in case. You don’t always have to go far. The very first trip we took was only 45 minutes from our local children’s hospital – and it was one of our favourites. There are ways to escape the daily grind while keeping our kids safe.

This opportunity has given us so much and I’ve met such inspiring families, all while doing things I’m passionate about. I never felt I had a place, until now.

Travelling Tubie

People dream about packing up their family and adventuring around the country – but if your kid has high medical needs, it can feel impossible. Chloe Turner challenges that feeling. And is currently living with her family in a caravan, travelling around Australia with her tube-feeding son in tow.

Tubie Truths

From One PEG Mother to Another